Apr 10, 2014
Hello Nelson- I was relieved when you posted that Taimed was going to continue to supply this drug. Now my doctor says they want $1000 to $2000.00 dollars a month in order to get the medication. What! How can they ask us to pay for an unapproved drug. I have medicare and my doctors doesn't think there is any hope of them paying and he wont buy any ibalizumab without assurance that he will get paid. Also some legal issues he says also. I know you are/were on this drug. What are you doing? Any helpful information would be greatly appreciated. Thank you
| Response from Mr. Vergel
It is legal for companies to try to use cost recovery of investigational medications provided by compassionate use. Few companies have used this FDA allowance, though.
Taimed is a very small company with low funding. Ibalizumab supply may be in jeopardy since they have not been able to secure a large commercial sponsor for their drug yet.
Some insurance companies will pay for investigational agents if the physician writes a medical necessity letter.
I talked to Taimed and they informed me that they will not stop providing free medication to current ibalizumab patients whose insurance companies do not pay for the drug. However, any new patients who want to access the drug in a compassionate manner will have to find ways to get it funded.
Taimed is offering support for doctors who are currently providing it to patients with multidrug resistance. Medical necessity should not be difficult to prove for most of us who need the drug for our survival. I am curious what insurance companies (or Medicare part D programs) will pay, so I am watching this process carefully.
This is unprecedented but the situation with this drug is also unprecedented in HIV.
Please keep me informed on any developments from your end.
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